PEONIES Member Interviews. State Fiscal Year 2012 FINAL REPORT

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1 PEONIES Member Interviews State Fiscal Year 2012 FINAL REPORT Report prepared for the Wisconsin Department of Health Services Office of Family Care Expansion by Sara Karon, PhD, PEONIES Project Director Mary Schlaak, MSSW, PEONIES Project Manager Center for Health Systems Research and Analysis University of Wisconsin Madison September 2012

2 Table of Contents EXECUTIVE SUMMARY... 1 A. BACKGROUND AND PURPOSE OF THE INTERVIEWS... 3 B. METHODOLOGY... 4 C. FINDINGS Overview Key Findings by Long Term Care Program Key Findings by Population Group Trends Over Time D. CONCLUSIONS AND RECOMMENDATIONS APPENDIX A: METHODS... A1 APPENDIX B: DETAILED TABLES BY OUTCOME AREA... B1 APPENDIX C: KEY PERFORMANCE INDICATORS BY MCO AND PROGRAM... C1 TABLES AND FIGURES Table 1. Key Performance Indicators Overall... 6 Table 2. Percent of Outcomes Fully Supported by Long Term Care Program... 7 Table 3. Reasons Outcomes are not Supported by Long Term Care Program... 7 Table 4. Percent of Outcomes Achieved or In Progress by Long Term Care Program... 8 Table 5. Percent of Outcomes That Are New by Long Term Care Program Table 6. Most Frequently Needed Types of Support by Program Table 7. Most Frequently Reported Sources of Support by Program Table 8. Percent of Outcomes Fully Supported by Population Group Table 9. Reasons Outcomes are Not Supported by Population Group Table 10. Percent of Outcomes Achieved or In Progress by Population Group Table 11. Percent of Outcomes That Are New by Population Group Table 12. Most Frequently Needed Types of Support by Population Group Table 13. Most Frequently Reported Sources of Support by Population Group Table A1. Coding Types of Supports Needed... A5 Table A2. Coding Sources of Support Needed... A8 Table B1. Key Performance Indicators Overall and by Outcome Area... B1 Table B2. Percent of People Interviewed with One or More Outcomes by Outcome Area... B2 Table B3. Percent of Outcomes Fully Supported by Long Term Care Program and Outcome Area... B3 Table B4. Percent of Outcomes Achieved or In Progress by Long Term Care Program and Outcome Area... B4 Table B5. Percent of Outcomes That Are New by Long Term Care Program and Outcome Area... B5 Page i

3 Table B6. Percent of Members with One or More Outcomes by Long Term Care Program and Outcome Area... B6 Table B7. Percent of Outcomes Fully Supported by Population Group and Outcome Area... B7 Table B8. Percent of Outcomes Achieved or In Progress by Population Group and Outcome Area... B8 Table B9. Percent of Outcomes That Are New by Population Group and Outcome Area... B9 Table B10. Percent of Members with One or More Outcomes by Population Group and Outcome Area... B10 Table C1. Key Performance Indicators by Long Term Care Program and MCO, SFY C1 Figure 1. Percent of Outcomes Achieved or In Progress by Long Term Care Program... 9 Figure 2. Percent of Outcomes Achieved or In Progress by Population Group Figure 3. Percent of Outcomes that Are Fully Supported by Population Group and State Fiscal Year Figure 4. Percent of Outcomes That Are Achieved or In Progress by Population Group and State Fiscal Year We wish to thank our colleagues at MetaStar, who coordinated the interviews with the MCOs and conducted the interviews with the members. We also wish to thank the staff at the MCOs who assisted in scheduling the interviews. Most importantly, we thank the many members of Family Care, Family Care Partnership, and their family members who participated in these interviews, and who graciously shared so much of their lives with us. Page ii

4 EXECUTIVE SUMMARY During SFY2012, interviews were conducted with 549 members of Wisconsin s Long Term care programs, including Family Care (FC), Family Care Partnership (FCP), and IRIS. Interviews were conducted using the state s approved method for identifying personal experience (quality of life) outcomes, known as PEONIES (Personal Experience Outcomes integrated Interview and Evaluation System). Data were analyzed and reports provided back to the managed care organizations (MCOs), for use in quality improvement activities. This report summarizes the findings across the state, and compares the quality of life experiences of people served by the different Long Term care programs. It also compares the quality of life experiences of people in different target population groups: people with developmental disabilities (DD), people with physical disabilities (PD), and people who are eligible as a result of age-related impairments (frail elders, FE). Key Performance Indicators PEONIES provides extensive data on the types of outcomes that are important to people, the status of those outcomes with regard to achievement and support, and the types and sources of supports that are needed by individuals. Two key performance indicators provide a high-level overview of quality of life. The percent of outcomes that are achieved or in progress. This indicator shows the success of individuals in having the quality of life desired. Outcomes that are achieved are those that are exactly as the individual desires, e.g., I want to continue living with my parents in this house. Outcomes that are in progress also represent a positive situation, e.g., I want to keep going to school to learn to be a car mechanic. In SFY2012, 82% of outcomes were achieved or in progress. Members of IRIS were more likely to report that outcomes were achieved or in progress (87%) than was the case in FC (81%) or FCP (78%). People with physical disabilities were less likely to report that outcomes were achieved or in progress (77%) than were people with developmental disabilities (85%) or frail elders (86%). The most frequent reason that outcomes were not achieved or in progress is that they were new, i.e., they had not been identified previously as desired outcomes. The percent of outcomes that are fully supported. This indicator reports on how well outcomes are being supported. Any given outcome may require one or more supports to maintain or make progress toward the desired goal. Outcomes are fully supported only when all necessary supports are available, adequate, and acceptable, as reported by the member or member s proxy. Outcomes that are not fully supported may be partially supported, and may even be achieved; however, without full support, they are at risk. For example, a member who is living where desired in a private home may be at risk of entering a nursing home if the necessary supports for personal care are inadequate, even if supports for transportation and meals are available, and adequate, and acceptable. In SFY2012, 85% of all outcomes were fully supported. Page 1

5 Outcomes were more likely to be described as fully supported by IRIS members (89%) than by FC (85%) or FCP (82%) members. People with physical disabilities were less likely (79%) to have outcomes fully supported than were people with developmental disabilities (88%) or frail elders (90%). Other Key Findings PEONIES identifies outcomes in twelve distinct quality of life domains or outcome areas. Not all outcome areas are equally important, and members may not identify outcomes in all twelve areas. The achievement and support of outcomes may differ by domain. The outcome areas that were important to the greatest share of members were those related to living where and with whom ones desires; having relationships with family and friends; working or doing other things that are personally meaningful; and having the best possible health. Outcomes related to deciding how to spend one s day, having privacy, feeling safe, and being free from abuse and neglect had the highest rates of support. Outcomes related to employment, health, having a preferred living arrangement, and working or doing other meaningful activities were the least well supported. The outcomes that were the most likely to be described as achieved or in progress were those related to making decisions about supports and services, making decisions about how to spend one s day, and having privacy. Outcomes that were the least likely to be achieved or in progress were those related to being employed, working or doing other meaningful activities, having desired interpersonal relationships, and being involved in one s communities. Often, those outcomes that were least likely to be achieved or in progress were the most likely to be described as new. The types and sources of support that members described varied only slightly by Long Term Care program or by population. The most frequently reported types of supports needed included transportation, IADL assistance, ADL assistance, and health services. The most frequent source of support were described as the members themselves, followed by their families. Residential care providers also were frequent sources of support for people with developmental disabilities and for frail elders. While SFY2012 marks the first year in which PEONIES interviews were conducted for all FC and FCP MCOs and for IRIS, PEONIES data are available from prior years, for some FC and FCP MCOs. These data offer a basis for comparison. Results indicate that the overall rates of outcome support and outcome achievement/progress have been fairly stable since SFY2009. Conclusions and Recommendations Results from the first statewide collection of PEONIES data indicate areas of strength. The majority of desired quality of life outcomes are achieved or in progress, and are being supported. Broadly speaking, this is true across Long Term Care programs and across populations. Some consistent differences, however, indicate areas of particular strength and opportunities for improvement. Page 2

6 Improve discussion of outcomes in FC and FCP programs. IRIS participants have more outcomes achieved or in progress than do members in the FCP/FC programs, by a statistically significant margin. To a large extent, this results from the lower rate of new outcomes identified by IRIS members. Due to the nature of the IRIS program, participants or those close to them may identify outcomes on an on-going basis without waiting for a team planning meeting to occur. Perhaps due to this constancy and consistency in goal setting (outcome identification), fewer outcomes are categorized as new. Although FC/FCP programs are different in design and structure, care managers in these programs may wish to provide members with more opportunity to discuss and identify the outcomes that are important to them. Doing so does not need to be part of a formal team meeting, but can occur through informal means during check-in calls or visits by any team member. This is part of natural relationship building with members, and also is a way to ascertain desired outcomes on an on-going basis. Improve support of outcomes for people with physical disabilities. People with physical disabilities were less likely than members of the other target groups to report that their outcomes were achieved/in progress and that outcomes were fully supported. Further investigation would need to be done to determine the reason for these differences. We speculate that this finding may result from the unique characteristics of this population (PD), including health concerns, age, or the availability of natural supports. Regardless of the reasons for these findings, they suggest an opportunity to improve the support of outcomes for people with physical disabilities, to reduce the observed disparities and to assure that people with physical disabilities have appropriate and necessary supports. Assure adequate support for members and their families. Individuals most frequently named themselves as a source of support, followed by their families, as a means to meet their desired outcomes. The majority of the time, members and their families felt up to the task (i.e., adequate) and were glad to do so (i.e., were acceptable). Care managers and independent consultants may want to work with members and families to assure that they are able to continue the levels of support on an on-going basis, to reduce the risk of burnout and subsequent need for suddenly increased formal supports. Efforts to provide supplemental supports, including respite services, can assist with this. Such efforts can enable members to continue to receive support from their preferred sources (self and family), and also would appear on its face to be a cost-effective approach to support. Implement PEONIES within long term care programs. The PEONIES interview process identifies quality of life measures from the perspective of long-term care recipients. Obtaining information for a representative sample by long term care program, population group, and for individual MCOs is a valuable, but non-trivial undertaking. By design, PEONIES can be used by care managers to support care planning activities. The use of PEONIES in this way could help reduce the number of new outcomes, especially in FC and FCP programs, and has the potential to improve support and achievement of outcomes. Further, if PEONIES were used in this way and data reported in a standardized way to DHS, performance indicators could be measured on an on-going basis. External quality review could validate the indicators that result from data collected by care managers, and focus efforts on supporting MCOs in their quality improvement activities. Such an approach could increase efficiency, and would be consistent with other types of quality assurance activities in long term care settings. Page 3

7 A. BACKGROUND AND PURPOSE OF INTERVIEWS The Quality Compliance Review (QCR) of the Family Care Managed Care Organizations (MCOs) is a mandatory External Quality Review (EQR) activity utilized to determine whether the Family Care and Family Care Partnership Managed Care Organizations (MCOs) comply with Federal Medicaid Managed Care Regulations and the contract between the Wisconsin Department of Health Services (DHS) and the MCOs. One method of discovery, related to compliance evaluation, is conducting interviews with members of the MCOs. The purpose of the Member Outcome Interviews is to provide data about the quality of life of members of Wisconsin s MCOs and how well person-centered quality of life is being supported. In Wisconsin, person-centered quality of life is assessed using the Personal Experience Outcomes integrated Interview and Evaluation System (PEONIES) approach. PEONIES was developed by staff at the University of Wisconsin Madison s Center for Health Systems Research and Analysis (CHSRA), and is designed for use both in external quality review and care planning. PEONIES uses semi-structured interviews that identify person-specific desired outcomes, and information about the achievement and support of these outcomes. A standardized approach is used to convert the individualized information into aggregate measures of outcome achievement and support at the organizational level. PEONIES has been tested and the resultant measures found to be reliable and valid for quality measurement, when used by well-trained staff. During the state fiscal year 2012, staff from MetaStar, Wisconsin s External Quality Review Organization, conducted PEONIES interviews with members of all Family Care (FC) and Family Care Partnership (FCP) MCOs. In addition, MetaStar conducted interviews with members of IRIS, Wisconsin s self-directed supports alternative to FC and FCP. Interviewers were trained by CHSRA staff, and received on-going oversight and support from CHSRA staff throughout the year. Data from the interviews were provided to CHSRA for analysis. CHSRA staff prepared reports for each MCO, which were provided to the DHS Office of Family Care Expansion for distribution to the MCOs. This report summarizes the findings across all of the MCOs and IRIS. As such, it highlights the types of outcomes that are important to members, the status of those outcomes with respect to achievement, and how well those outcomes were supported in the last year. It also provides insight into the relative experiences of people served by the three different programs (FC, FCP, IRIS) and the experiences of people by key population groups: people with developmental disabilities (DD), people with physical disabilities (PD), and people who experience frailty associated with aging (frail elders, FE). B. METHODOLOGY Details of the methodology used for selecting the sample, conducting the interviews, and analyzing the data are provided in Appendix A. We briefly describe the methodology here. The sample was selected to permit comparisons across the three Long Term Care programs, and across the three target population groups. This resulted in a final sample of 549 people across the state. These included 187 members of FC, 178 members of FCP, and 184 Page 4

8 members of IRIS. By population group, the sample included 191 people with developmental disabilities, 186 people with physical disabilities, and 172 frail elders. PEONIES data are collected through a semi-structured interview process that is designed to identify the personal experience outcomes most important to the member, the current status of those outcomes (achieved, in progress, new, other), and to identify the support for those outcomes. Interviews were conducted with the member, whenever possible. In some cases, proxy respondents family members, staff, friends, or others familiar with the member provided information in addition to the member; and in a few cases, a proxy was the sole source of information. In all cases, proxies were instructed to present information that would best represent the member s view. Two key performance indicators were measured: the percent of outcomes that are fully supported: all supports needed for the specific outcome are available, adequate, and acceptable to the member. This indicator excludes from the denominator any outcomes that the member describes as new, as it is not reasonable to expect that such outcomes will be fully supported the percent of outcomes that are achieved or in progress: as reported by the member, outcomes are achieved, meaning the situation is as the member desires, or the member is making progress toward the outcome. Data also are reported on the types of supports needed and the sources of those supports, whether provided by the Long Term care program or through some other means. Details about the results by the 12 quality of life domains (defined in Appendix A) are discussed in the text, with detailed tables given in Appendix B. C. FINDINGS We begin by describing the sample of members interviewed, and findings overall (Section C1.) In Section C2, we describe how these findings differ across the Long Term Care programs (FC, FCP, and IRIS), and in Section C3, we describe how they differ by population group (DD, PD, and FE). We also compare findings for SFY12 to previous time periods (Section C4). Results are presented at an aggregate level, with differences by outcome area discussed in the text. Detailed tables with results by outcome area are presented in Appendix B, with appropriate references in the text. Tables with numbers beginning B are found in Appendix B. C1. Overview Summary measures of the two key performance indicators are shown in Table 1. Overall, 85% of outcomes were fully supported, and 82% were achieved or in progress. These key performance indicators varied by outcome area (see detail in Table B1). Employment-related outcomes were both the least likely to be supported (69%) and the least likely to be achieved or in progress (57%). Outcomes with the greatest rates of support were in areas related to deciding how to spend one s day (95%) and having privacy (93%). These areas also were the most likely to be achieved or in progress (91% and 90%, respectively). Outcomes related to having privacy, feeling safe, and being free from abuse and neglect also had high rates of support (each at 93%). Page 5

9 Table 1. Key Performance Indicators Overall Measure Percent of outcomes fully supported 85% Percent of outcomes achieved or in progress 82% Note: Percent of outcomes fully supported excludes new outcomes, which are not expected to be fully supported. Not all members identified outcomes in all areas. On average, members identified seven (7) outcomes. Areas in which the members were most likely to report one or more outcomes (see Table B2) were: Deciding where and with whom to live (99%) Having relationships with family and friends (88%) Working or doing other things that are meaningful (88%) Having the best possible health (87%). Members were least likely to identify outcomes in areas related to stability (25%), being respected and treated fairly (32%), having privacy (31%), and being free from abuse and neglect (10%). These are areas in which members who have never experienced a lack of the condition simply take the presence of these things (i.e., stability, respect, privacy, freedom from abuse and neglect) as givens, and so do not articulate specific outcomes. In the following sections, we identify how these key findings vary by Long Term Care program (Section C2) and by population group (Section C3). C2. Key Findings by Long Term Care Program Key Performance Indicator #1: Percent of Outcomes that are Fully Supported The percent of all outcomes that were fully supported (all necessary supports available, and adequate, and acceptable to the member) ranged from a low of 82% in the Family Care Partnership program to a high of 89% for outcomes identified by members of IRIS (Table 2). The difference across programs was statistically significant. However, this range is fairly narrow and may not be of substantive significance. Table B3 shows the detail of support by outcome domain. This helps to examine whether different Long Term care programs are more or less successful at supporting particular types of outcomes. With two exceptions, there were no statistically significant differences in the support of outcomes by domain. Members of FCP were less likely to have support of outcomes related to deciding how to spend their days than were members of FC or IRIS. Nonetheless, the rate of support at FCP still was relatively high, at 88%. Page 6

10 Members of FCP also were less likely to have full support of outcomes related to privacy (82%) than were members of FC (93%) or IRIS (97%). The reasons why outcomes are not fully supported are shown in Table 3. Members at IRIS were less likely than others to describe supports as being unacceptable or inadequate. Members at FCP were more likely than others to describe reports as being unavailable. Table 2. Percent of Outcomes Fully Supported by Long Term Care Program TOTAL Outcome Area Family Care Family Care Partnership IRIS Stat. Signif. 85% 82% 89% *** Note: Excludes outcomes described as new. Statistical significance was tested by ANOVA. ***p<.001 Table 3. Reasons Outcomes are Not Supported by Long Term Care Program Support of Outcomes FC FCP IRIS Number of Outcomes Statistical Significance Supported (%) Supports Not In Place (%) Supports Inadequate (%) Supports Unacceptable (%) 85% 82% 89% *** * * *** Notes: Results do not sum to 100%, as outcomes may be unsupported for multiple reasons. Excludes new outcomes. Statistical significance of differences between programs is tested using ANOVA. * p<.05; ** p<.01; *** p<.001. Key Performance Indicator #2: Percent of Outcomes that are Achieved or In Progress The percent of outcomes that were either achieved or in progress ranged from a low of 78% for members of the Family Care Partnership programs to a high of 87% for members of IRIS (Table 4). This difference was statistically significant, and the variation was large enough to also appear to be of substantive significance. The status of outcomes as achieved or in progress varied by outcome area (see detail in Table B4). Page 7

11 In most outcome areas, there were no differences by Long Term Care program. Members of IRIS were the most likely to report that outcomes related to making decisions about supports and services, and making decisions about how to spend their days, were achieved or in progress. Members of IRIS also were the most likely to report that outcomes related to being treated respectfully and fairly were achieved or in progress. Members of FCP were the least likely to report achievement or support of outcomes related to being involved in their communities. This key performance indicator combines achievement and progress into a single measure, as both achievement and progress are considered to be positive situations. Figure 1 illustrates the contribution of achievement of progress to the key performance indicator. FC and FCP members have similar rates of outcomes that are achieved or in progress, but at FCP a greater share of the outcomes are described as in progress. There are higher rates of outcomes achieved or in progress at IRIS. For IRIS members, a much greater share of outcomes are achieved than in progress than is the case for members of FC and FCP. Table 4. Percent of Outcomes Achieved or In Progress by Long Term Care Program Outcome Area Family Care Family Care Partnership IRIS TOTAL 81% 78% 87% Statistical Significance *** Percentages are based on number of outcomes identified, not number of individuals. Significant differences are identified using ANOVA. *** p<.001 Page 8

12 Figure 1. Percent of Outcomes Achieved or In Progress by Long Term Care Program 100% 90% 80% 70% 60% 50% 40% Outcomes In Progress (%) Outcomes Achieved (%) 30% 20% 10% 0% Family Care Partnership IRIS Percent of Outcomes that are New One reason that outcomes may not be achieved or in progress is that they are new outcomes (Table 5). Having new outcomes is not necessarily a bad thing, and may be a very good thing. New outcomes may result from a change in health (e.g., My doctor just told me I have diabetes, and I want to learn how to live with it better. ), a change in life circumstance (e.g., I want to get a job in the criminal justice field now that I finished my degree ), or simply a new desire (e.g., I d like to join a bowling league, so that I can meet new people ). Desiring new outcomes is a part of life. Having new outcomes may indicate a positive engagement with life. However, a large number of new outcomes may indicate that people are not being given the opportunity to talk about the things that are important to them, or not being supported to recognize options and opportunities. Overall, members of IRIS reported fewer new outcomes (9%) than did members of FC or FCP (14% and 13%, respectively), a difference that is statistically significant. Members of IRIS were significantly less likely than members of FC or FCP to identify new outcomes related to control over their supports and services, or control over how they spend their day (see detail in Table B5). This may reflect the unique nature of IRIS as a self-directed program. Members of IRIS also were less likely to identify new outcomes related to being treated respectfully and having privacy. Members of FCP were more likely than others to identify new outcomes related to community involvement. Nearly one-quarter (23%) of FCP members outcomes related to community involvement were described as new. Page 9

13 Table 5. Percent of Outcomes That Are New by Long Term Care Program Outcome Area Family Care Family Care Partnership IRIS TOTAL 14% 13% 9% Statistical Significance *** Note: Significant differences are identified using ANOVA. *** p<.001 These key performance indicators show at a broad level how well members are achieving outcomes, and how well those outcomes are being supported. One question that might be asked is whether the outcomes that are important to members are the same across programs. Some outcomes may be more difficult to support or achieve than others. Health outcomes, for example, may be very difficult to achieve and may never be fully achieved. Consider, for example, a person who lives with chronic pain. Such a person might have an outcome of being pain free. That may be difficult to achieve, but the person might be able to reduce or better manage their pain, in which case the outcome might be described as being in progress. Whether or not a complete remission of pain is possible, the outcome could be fully supported. Types of Outcomes that are Important to People PEONIES organizes personal experience outcomes, the specific things that individuals identify as important aspects of their quality of life (e.g., I want to live with my best friend, Bob, in an apartment that is close to my job ) into twelve quality of life domains, also called outcome areas (e.g., I decide where and with whom I live ). At any given time, some domains of quality of life may be more important to people than others (see Table B6 for detail). IRIS members are more likely than members of FC or FCP to identify outcomes related to control of supports and services, and control over how they spend their time. This is consistent with the focus of IRIS on self-directed supports. People in IRIS also are more likely than those in other programs to identify outcomes related to being respected and treated fairly, and having privacy. People in IRIS are less likely than those in Family Care and Family Care Partnership to identify outcomes related to feeling safe. Members of FC are the most likely to identify employment outcomes (37%), while members of FCP are the least likely to do so (24%). Outcome areas in which few people identified outcomes included being free from abuse and neglect (9-10% of members), stability (about 24% across programs) and having privacy (less than 30% for members of Family Care and Family Care Partnership; 41% for members of IRIS). Most Frequently Needed Types and Sources of Support Members were asked about the types and sources of support needed for each outcome identified. Table 6 shows the types of support most often reported by members, by Long Term Care program. Page 10

14 Across programs, the most frequently needed type of support was transportation, which was needed to support about one-quarter of all outcomes. Support for activities of daily living (ADLs, including such things as bathing, dressing, and using the toilet) and instrumental activities of daily living (IADLs, such as preparing meals, cleaning, and managing finances) were the next most often needed types of support. Other frequently needed supports were health related services, social supports, communication, and support coordination. Support coordination was reported more frequently by IRIS members than others, a difference that was statistically significant. Table 6. Most Frequently Needed Types of Support by Program Type of Support Family Care (N=1142) Family Care Partnership IRIS (N=1299) (N=1084) Transportation 26% 26% 25% Activities of daily living (ADL) 22% 20% 17% Instrumental activities of daily living (IADL) 21% 21% 16% Health related services 14% 16% 16% Social supports 14% 14% 15% Communication 11% 15% 12% Support coordination 8% 7% 12% Notes: N refers to the total number of outcomes identified by members. Data indicate the percentage of outcomes for which members reported needed the specific type of support. Any given outcome may require multiple types of support. Only the most frequently reported types of support are shown. Table 7 shows the most frequently reported sources of support by program. While similar sources of support were reported in each of the programs, some differences were observed in the relative importance of these sources. Across all programs, members reported that they themselves were the most frequently used source of support for outcomes. This was true for nearly half of the outcomes in FC and FCP, and for 61% of the outcomes in IRIS. Family members also were a significant source of support for all outcomes, supporting more than one-third (36%) of outcomes in IRIS and over a quarter of outcomes in FC and FCP. Residential care providers were frequent sources of support for members of FC and FCP, but much less so for members of IRIS. Members of FCP reported that the MCO was a common source of support (17% of outcomes). Members of FC and IRIS were much less likely to identify the Long Term Care program as a source of support. Page 11

15 Table 7. Most Frequently Reported Sources of Support by Program Source of Support Family Care (N=1142) Family Care Partnership IRIS (N=1299) (N=1084) Self 48% 49% 61% Family 29% 25% 36% Residential care provider 22% 15% 3% MCO/IRIS 8% 17% 5% Notes: N refers to the total number of outcomes identified by members. Data indicate the percentage of outcomes for which members reported using the specific source of support. Any given outcome may require multiple sources of support. Only the most frequently reported sources of support are shown. C3. Key Findings by Population Group In this section, we present findings by population group, regardless of the program in which they are enrolled. There is no reason to expect that the quality of the experiences of different populations should differ overall, but it may be reasonable to expect that the specific outcome areas will hold different meaning and importance to these populations, as they differ by underlying health and disability issues, and by stage of life. Key Performance Indicator #1: Percent of Outcomes that are Fully Supported Overall, people with physical disabilities were least likely to report that their desired outcomes were fully supported (79%), while elders were the most likely to report that outcomes were fully supported (90%). These differences were statistically significant (Table 8). The likelihood that outcomes were fully supported differed by the outcome area (see detail in Table B7). In all cases where differences were statistically significant, people with physical disabilities were less likely than the other population groups to have support for their desired outcomes. This was true for outcomes related to living where and with whom one desires, working or doing other meaningful activities, being involved in one s community, having the best possible health, and feeling safe. People with developmental disabilities and frail elders reported very similar levels of support for outcomes in nearly all outcome areas. People with developmental disabilities were much less likely than frail elders to report support for outcomes related to being treated fairly and respectfully. While this difference was not statistically significant, it approach significance (p<.10), and is a large enough absolute difference to warrant attention. Table 9 shows the reasons why outcomes were not fully supported. People with physical disabilities reported that 10% of necessary supports were not in place, and 10% were inadequate to the task. Inadequacy may indicate either a quantitative lack (e.g., person needs transportation to work 5 days a week, but only has transportation 3 days a week), or a lack of technical adequacy (e.g., a person who desires a reduction in pain is using a medication that is not working adequately). Page 12

16 Table 8. Percent of Outcomes Fully Supported by Population Group Outcome Area DD PD FE Statistica (N=1221) (N=1137) (N=1036) l 88% 79% 90% *** TOTAL Note: Excludes outcomes described as new. Statistical significance was tested by ANOVA. ***p<.001 Table 9. Reasons Outcomes are Not Supported by Population Group Support of Outcomes DD PD FE Number of Outcomes Statistical Significance Supported (%) Supports Not In Place (%) Supports Inadequate (%) Supports Unacceptable (%) *** *** *** *** Notes: Results do not sum to 100%, as outcomes may be unsupported for multiple reasons. Excludes new outcomes. Statistical significance of differences between programs is tested using ANOVA. * p<.05; ** p<.01; *** p<.001. Key Performance Indicator #2: Percent of Outcomes that are Achieved or In Progress People with physical disabilities had the fewest outcomes that were achieved or in progress, at a rate of 77%. (Table 10). People with developmental disabilities and elders had similar rates of outcomes that were achieved or in progress (85% and 86%, respectively). As shown in Figure 2, frail elders were somewhat less likely to report outcomes in progress, and more likely to report that outcomes were fully achieved. People with physical disabilities were slightly more likely than were people with developmental disabilities to report that outcomes were in progress than fully achieved. Population groups varied in the likelihood that outcomes that were achieved or in progress by outcome area (see detail in Table B8). Page 13

17 In all outcome areas in which there were significant differences by population group, people with physical disabilities were less likely than others to report that outcomes were achieved or in progress. The types of outcome that were most likely to be achieved or in progress for people with physical disabilities were those related to deciding how they spend their day (90%) and having privacy (92%). For people with developmental disabilities, the outcomes that were most likely to be achieved or in progress were those related to making decisions about supports and services (91%), deciding how to spend one s day (93%), and feeling safe (92%). Frail elders reported that the outcomes most likely to be achieved or in progress were related to deciding where and with whom to live (90%), making decisions about supports and services (93%), having privacy (93%), feeling safe (93%), and being free from abuse and neglect (92%). For all population groups, employment outcomes were the least likely to be achieved or in progress. However, the absolute rate of achievement or progress of employment outcomes varied dramatically by outcome group, from 72% for people with developmental disabilities to only 33% for frail elders. Other areas with low rates of achievement or progress differed by population group. In addition to employment-related outcomes, people with developmental disabilities reported low rates of achievement/progress for outcomes related to being free from abuse and neglect (77%). People with physical disabilities reported low rates for outcomes related to doing meaningful activities, including work (66%) and being involved in their communities (68%). Frail elders also reported low rates of achievement/progress for outcomes related to doing meaningful activities (77%). Percent of Outcomes that are New One reason that outcomes may not be achieved or in progress is because they are new. As discussed previously, some rate of new outcomes is a positive sign of engagement, while a large number may indicate inadequate attention to particular types of outcomes. Overall, people with physical disabilities were more likely than others to describe outcomes as being new (Table 11). This pattern also was observed in each outcome area where differences among populations were statistically significant (see detail in Table B9). People with developmental disabilities were most likely to describe outcomes as new that were related to being free from abuse and neglect (23%), employment (21%), and being treated respectfully (20%). People with physical disabilities were most likely to describe outcomes related to employment (29%), community involvement (26%), and stability (24%) as new. Frail elders, like the other two groups, also were most likely to identify employment outcomes as being new (31%). Page 14

18 Table 10. Percent of Outcomes Achieved or In Progress by Population Group Outcome Area PD DD FE Statistical Significance TOTAL 85% 77% 86% *** Percentages are based on number of outcomes identified, not number of individuals. Significant differences are identified using ANOVA. *** p<.001 Figure 2. Percent of Outcomes Achieved or In Progress by Population Group 100% 90% 80% 70% 60% 50% 40% Outcomes In Progress (%) Outcomes Achieved (%) 30% 20% 10% 0% DD PD FE Table 11. Percent of Outcomes That Are New by Population Group Outcome Area DD PD FE TOTAL 11% 16% 8% Statistical Significance *** Note: Percentages are based on the number of outcomes identified. Tests of significant differences are done using ANOVA. *** p<.001 Page 15

19 Types of Outcomes that are Important to People There is no reason to expect that the relative importance of different outcome areas will vary by the population. Results are generally consistent with this (see detail in Table B10). In most cases, there are no significant differences in the percent of the population that reports having one or more desired outcome in each area. However, some differences were observed. Nearly everyone identified one or more outcomes related to living situation. The largest difference is found in the percent of people who identify one or more outcomes related to health. The vast majority (95%) of people with physical disabilities have one or more health-related outcomes, whereas this is true for many fewer people with developmental disabilities (81%). The nature of physical disabilities may imply a greater number of health problems, so that this difference is not surprising. Members of the other two population groups (DD, FE) may have fairly stable health, so that their priorities are placed elsewhere. Elders are less likely to identify outcomes related to working or doing other things that are important to them. This is a difficult finding to understand. While it is reasonable to believe that elders may be less likely to want to work retirement is an expected part of life this area also captures other activities that may be important to people, such as volunteer activities and hobbies, both of which may be important to people at any age. People with developmental disabilities are more likely than either of the other population groups to describe outcomes related to community involvement. This may reflect a common experience of people with developmental disabilities who often receive services throughout their lives that emphasize community involvement. Elders are less likely than either of the other population groups to report outcomes related to stability. This finding is consistent with the greater rate of outcomes being achieved and fewer new outcomes that was discussed previously in this report. People with physical disabilities were the most likely to identify outcomes related to being treated with respect and fairness (39%). The other two groups reported similarly lower rates of outcomes in this domain (27-28%). Most Frequently Needed Types and Sources of Support Table 12 shows the most frequently needed types of support reported by each population group. Transportation was among the most frequently needed support for all population groups, but especially so for people with developmental disabilities. Nearly one-third (32%) of the outcomes they identified required transportation. Need for assistance with IADLs and ADLs also was reported frequently by each population group. This was especially true for frail elders. ADL assistance was their most frequent need, reported for nearly one-quarter of all outcomes. Assistance with these types of support can come from a variety of sources (Table 13). The most frequent sources of support, for all population groups, come from the members themselves and from their families. People with developmental disabilities and frail elders also often receive support from residential care providers. Page 16

20 Roughly 10% of individual reported that the Long Term care program was a source of support. Table 12. Most Frequently Needed Types of Support by Population Group Type of Support DD (N=1256) PD (N=1188) FE (N=1081) Transportation 32% 24% 21% Instrumental activities of daily living (IADL) 19% 19% 20% Social supports 16% 11% 17% Activities of daily living (ADL) 15% 19% 24% Health related services 13% 17% 15% Communication 13% 13% 13% Support coordination 10% 10% 8% Notes: N refers to the total number of outcomes identified by members. Data indicate the percentage of outcomes for which members reported needed the specific type of support. Any given outcome may require multiple types of support. Only the most frequently reported types of support are shown. Table 13. Most Frequently Reported Sources of Support by Population Group Source of Support DD (N=1256) PD (N=1188) FE (N=1081) Self 47% 59% 54% Family 35% 24% 32% Residential care provider 15% 7% 16% MCO/IRIS 8% 11% 9% Notes: N refers to the total number of outcomes identified by members. Data indicate the percentage of outcomes for which members reported using the specific source of support. Any given outcome may require multiple sources of support. Only the most frequently reported sources of support are shown. C4. Trends over Time PEONIES data have been collected in Wisconsin for several years now, for various purposes. In SFY , data were collected for members of some FC and FCP MCOs, as part of validation activities. IN SFY2011, PEONIES interviews were again collected in some FC and FCP MCOs for purposes of piloting the scheduling, interview, and reporting process as part of external quality review. This is the first year that data have been collected for IRIS members. The sample selection process in each period has differed, to meet the demands of the specific goals for that time period. Despite these differences, it is useful to examine trends over time. The trends over time, in total and by population group, are shown in Figure 3 for the percent of outcomes supported and Figure 4 for the percent of outcomes that are achieved or in progress. The percent of outcomes that are supported has been essentially unchanged over the last four fiscal years, with a slight dip in the middle time period. This trend is seen in all population groups (Figure 3). Page 17

21 The percent of outcomes that are achieved or in progress has been essentially unchanged over the last four fiscal years (Figure 4). Figure 3. Percent of Outcomes that are Fully Supported by Population Group and State Fiscal Year 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Total DD PD FE SFY09-SFY10 SFY2011 SFY2012 Figure 4. Percent of Outcomes Achieved or In Progress by Population Group and State Fiscal Year 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% Total DD PD FE SFY09-SFY10 SFY2011 SFY2012 Page 18

22 D. CONCLUSIONS AND RECOMMENDATIONS Discussion As part of its SFY2012 Quality Compliance Review activities, interviews were conducted with 549 members of Family Care (FC) and Family Care Partnership (FCP) MCOs, and IRIS-to produce comparisons of performance across target populations and programs. PEONIES interviews were conducted with 187 members of FC, 178 members of FCP, and 184 members of IRIS. By population group, the sample included 191 people with developmental disabilities, 186 people with physical disabilities, and 172 frail elders. This distribution was representative of the overall membership of people receiving services through the Family Care, Partnership and IRIS programs in which the interviews were conducted. In approximately one-third of interviews, information was provided with the assistance of a person knowledgeable about the member (i.e., a proxy). With few exceptions, each person discussed all of the twelve personal experience outcome areas. This discussion could result in the identification of none, one or more unique outcomes in each of the twelve outcome areas, depending on the individual. On average, each individual identified 7 unique outcomes. These outcomes were not equally distributed among the different outcome areas. Nearly everyone (99%) had one or more outcomes related to their living situation, while very few (10%) identified outcomes related to being free from abuse and restraint. In terms of the two key performance measures, the majority of outcomes were fully supported across target groups and program types (85%) and fully achieved or in progress (82%) across target group and program type. When an outcome was not achieved, the predominant reason for it not being so, was because it was new. Of specific interest, IRIS was found to have the most fully supported, achieved outcomes and the lowest number of new outcomes. By target group, people with physical disabilities had the lowest rates of outcomes being fully supported, and achieved. They also had the highest number of outcomes which were described as new. Outcome areas with the lowest rates of support included employment, deciding where and with whom to live, and health. Outcomes least likely to be achieved were those related to having relationships, employment, and doing other meaningful things. Examining the supports in these areas and addressing any deficiencies may very well increase the rate of achievement in these areas. PEONIES interviewers asked members about the types of supports they required to attain their outcomes as well as the sources of those supports. The most frequent types of support needed were transportation, followed by IADL and ADL assistance and health related services. The main source of supports was from the members themselves or their families. Other frequent sources of supports included residential care providers and the MCOs. Recommendations Results from the first statewide collection of PEONIES data indicate areas of strength. The majority of desired quality of life outcomes are achieved or in progress, and are being supported. Broadly speaking, this is true across Long Term Care programs and across populations. Some Page 19

23 consistent differences, however, indicate areas of particular strength and opportunities for improvement. Improve discussion of outcomes in FC and FCP programs. IRIS participants have more outcomes achieved or in progress than do members in the FCP/FC programs, by a statistically significant margin. To a large extent, this results from the lower rate of new outcomes identified by IRIS members. Due to the nature of the IRIS program, participants or those close to them may identify outcomes on an on-going basis without waiting for a team planning meeting to occur. Perhaps due to this constancy and consistency in goal setting (outcome identification), fewer outcomes are categorized as new. Although FC/FCP programs are different in design and structure, care managers in these programs may wish to provide members with more opportunity to discuss and identify the outcomes that are important to them. Doing so does not need to be part of a formal team meeting, but can occur through informal means during check-in calls or visits by any team member. This is part of natural relationship building with members, and also is a way to ascertain desired outcomes on an on-going basis. Improve support of outcomes for people with physical disabilities. People with physical disabilities were less likely than members of the other target groups to report that their outcomes were achieved/in progress and that outcomes were fully supported. Further investigation would need to be done to determine the reason for these differences. We speculate that this finding may result from the unique characteristics of this population (PD), including health concerns, age, or the availability of natural supports. Regardless of the reasons for these findings, they suggest an opportunity to improve the support of outcomes for people with physical disabilities, to reduce the observed disparities and to assure that people with physical disabilities have appropriate and necessary supports. Assure adequate support for members and their families. Individuals most frequently named themselves as a source of support, followed by their families, as a means to meet their desired outcomes. The majority of the time, members and their families felt up to the task (i.e., adequate) and were glad to do so (i.e., were acceptable). Care managers and independent consultants may want to work with members and families to assure that they are able to continue the levels of support on an on-going basis, to reduce the risk of burnout and subsequent need for suddenly increased formal supports. Efforts to provide supplemental supports, including respite services, can assist with this. Such efforts can enable members to continue to receive support from their preferred sources (self and family), and also would appear on its face to be a cost-effective approach to support. Implement PEONIES within long term care programs. The PEONIES interview process identifies quality of life measures from the perspective of long-term care recipients. Obtaining information for a representative sample by long term care program, population group, and for individual MCOs is a valuable, but non-trivial undertaking. By design, PEONIES can be used by care managers to support care planning activities. The use of PEONIES in this way could help reduce the number of new outcomes, especially in FC and FCP programs, and has the potential to improve support and achievement of outcomes. Further, if PEONIES were used in this way and data reported in a standardized way to DHS, performance indicators could be measures on an on-going basis. External quality review could validate the indicators that result from data collected by care managers, and focus efforts on supporting MCOs in their quality improvement activities. Such an Page 20

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